Jury Finds for Boston Scientific in North Carolina Pelvic Mesh Trial

Jury Finds for Boston Scientific in North Carolina Pelvic Mesh Trial

Uphold, Taranakiobgyn, NZ website

MND, October 19, 2015 ~ On Friday, October 16, Boston Scientific (BSC) received a favorable jury verdict in a Statesville, North Carolina courtroom in a product liability trial filed by Martha Carlson, 65.

The case, Ramona Winebarger, et al. v. Boston Scientific Corp., No. 15-57, was heard in the Western District of North Carolina. It was remanded from federal court and multidistrict litigation. The case number is 5:15-cv-00057-RLV-DCK.

“While disappointed, especially for our client, this is the first in many upcoming cases set for trial. We look forward to our next trial which we think will conclusively prove that Boston Scientific marketed an unsafe product that has hurt thousands of American women” said Jeff Larimore of Mueller Law of Austin, Texas.

In 2010, Ms. Carlson was implanted with an Uphold pelvic mesh device to treat pelvic organ prolapse. Today she says she has debilitating, chronic pelvic pain, incontinence and dyspareunia or painful sex.

In its decision, the jury said Ms. Carlson did not prove Boston Scientific acted unreasonably in designing the Uphold device that caused her injuries. According to the jury in its 12-0 vote, Ms. Carlson did not prove by the preponderance of the evidence that Boston Scientific breached an implied and implied warranty of merchantability.

The case was a defense pick. Jurors said afterward they did not think that her injuries were related to the mesh and that her injuries were not very significant.

After partial summary judgment in April before Judge Richard Vorhees, of the Western District of N.C., evidence was allowed to be admitted about the 510(k) clearance procedure of the U.S. Food and Drug Administration (FDA) that allows pelvic mesh to make it to market with little scrutiny for safety. The case was pared down to claims of negligent design, breach of implied warranty of merchantability and punitive damages.

Judge Vorhees also denied her failure to warn claim, meaning the doctor received adequate information from Boston Scientific.

TRIAL BRIEF

According to her trial brief, the polypropylene used to make the Uphold is “impure, non-medical-grade” known as Marlex that “shrinks, hardens, bunches and degrades,” in the body. The weave is so small that bacteria is entrapped and so are nerves, resulting in pelvic pain.

After a partial removal attempt, Ms. Carlson says the mesh broke apart into small pieces.

Marlex resin is issued by Chevron Phillips. Its Material Safety Data Sheet says it is not to be used in implantable medical devices that come in contact with internal bodily fluids or tissues.

For its part, Boston Scientific said Ms. Carlson’s injuries are not from the Uphold, which is made of Polyform mesh. Made by Proxy Biomedical, Polyform mesh is uncoated monofilament macroporous polypropylene. The company says that mesh is safe and effective and that Ms. Carlson’s pelvic organ prolapse improved after she was implanted.

The company also says there is no reasonable alternative to the Uphold design.

The trial went to the jury October 16, ten days after it began, which returned the verdict on the same day.

The Carlson case was originally filed in multidistrict litigation underway in Charleston, W. federal court where Boston Scientific is facing 19,222 cases facing Boston Scientific alleging defective design and manufacture and a failure to warn. See the court calendar here.

The jury in the case of Barba v. BSC issued an unprecedented $100 million award in May. Last week, it was reduced by the Delaware federal judge and BSC was denied a new trial. See story here.

The Los Angeles trial of Sanchez v. Boston Scientificsettled just before it went to the jury last May (2:12-cv-05762). See the story here.

Boston Scientific suffered a $73.5 million jury loss in the September 2014 case of Martha Salazar. The jury also found Boston Scientific was “grossly negligent” and included $50 million in punitive damages. That amount was later reduced by half due to tort reform. See story here.

Last November, the company lost two separate federal trials alleging the company made defective pelvic mesh – one in West Virginia where jurors delivered an $18.5 million verdict to four plaintiffs plus an additional $1 million in punitive damages. See Tyree v Boston Scientific (2:12-cv-08633) The jurors there too concluded the company acted with “gross negligence.”

In a Miami federal court last November, four women injured by the company’s Pinnacle mesh, were collectively awarded $26.7 million. See the story here.

Boston Scientific received favorable jury verdicts twice before, in the Maria Cardenas case in Massachusetts where the jury ruled her Obtryx mesh was not defectively designed, and in the Albright case, also heard in the same Woburn, Mass courtroom over the Pinnacle pelvic mesh.

The Defendant began settling 3,000 cases for $119 million cases earlier this year. See story here.

Pinnacle

RECALLS

BSC’s Pinnacle Pelvic Floor Repair kit was recalled by the company in 2011 because of concerns a needle may detach from the mesh during placement.

Boston Scientific’s ProteGen was the first mesh sling to be manufactured and used as a prototype or “predicate” for a generation of meshes to follow. The company pulled it from the market in 1999 because it had higher than expected rates of erosion and did not perform as intended. See story here.

Even though it was used as the basis for future designs, the FDA has no process to review the subsequent designs that named ProteGen as its predicate device. #

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I’m National News Editor, Jane Akre and I began Mesh Medical Device News Desk aka Mesh News Desk (MND) in the summer of 2011 just after the Food and Drug Administration issued an explicit warning to the public that complications associated with surgical mesh used for prolapse repair (POP) and incontinence (SUI) are NOT rare! That was the starting point for the litigation you see today and thousands of lawsuits have been filed by women whose lives have been altered, some permanently, by the use of this petroleum-based product.

One never knows. The jury could be predisposed and lie during the voire dire process where potential jurors are interviewed to learn of their leanings. Both sides get a certain number of eliminations. The jury could NOT have liked the Plaintiff, not found her sympathetic. They could NOT like lawyers and Plaintiffs; they could believe the myth that women are looking for a “pay day;” they could be from a very conservative area that believes trial lawyers need to be reigned in as the tort reformers preach; they could love corporations because they provide jobs… etc etc…. who knows what goes on in the mind of a juror. That’s why law firms employ lawyers just to provide jury questions- did you see the film “The Judge” It showed questions potential juries asked and whether they are disqualified…

Please God say that the Plaintiff’s attorney didn’t argue that the weave is so small that the nerves get trapped in it. Just laughable argument. Defendant Attorneys must have fallen out of their chairs when they heard that. Shape, size, placement procedure , anatomic variation among humans, and isolated specific diagnoses are the key. Unfortunately, the MD/JD involved in prep was a OBY/GYN. I will say again to the most injured…. Get the best care and things will work out. The real experts and the best prepared cases will be coming. Again… Pain is Pain. You will lose specific causation if you don’t work up the type of pain.

The point of the story is for the most injured, “Pain Is Just Pain”. What structure was injured? Why did the design defect injure that structure? What function does that damaged structure perform? That will get to the Specific Design Defect that caused the specific structural damage that assist with ‘Specific Causation’. ‘Pelvic Pain’ and ‘Chronic Pelvic Pain’ will be written on all of the seriously injured medical records. ‘Pelvic Pain’ doesn’t mean much when the jury sees a woman plaintiff looking fairly well in trial. There is no MRI that shows a huge disc herniation on a nerve. With the scarcity in services of qualified providers it may take 12-24 months to get the diagnosis and effective treatment to medically be ready for litigation.

I have always said, get the care you need and deserve, the litigation will work out. Remember 99% of Oby-Gyn ‘Pain Is Just Pain’. Find the 1%.

Greg, I thought that I had found that 1%!! However after yesterday’s visit she doesn’t seem to think the mesh is my issue!! She believes my issues are caused from intertestial cystitis I know you had posted that 9/10 are PND! Now she want’s to send me to a urologist to see if collagen injections would help with SUI! She doesn’t really want to remove the 2 defective devices due to the length of time however will try if I insist! I was told by my attorney firm that there was a deadline of having surgeries, so appeal will be done! I felt after today I am being pushed into whatever the settlement to take it because of the monies involved and she brought up the recent cases lost! I was told every injury has to be noted by the doctor-mesh related! Even after what has been proven. Category 4-the $300,000 payout includes pain and suffering, no intimacy. It doesn’t appear that too many injuries will be associated within the tiers! I’m tired, confused, pain extreme daily. Ready to throw the towel in!

Barb- And cut that amount in half is what you get. Hardly enough. That’s why many are decided to reject the settlement if they can.

Worried
October 24, 2015 at 8:12 am

And if we appeal their offering, how much longer do we have to wait? Years perhaps, but as for myself i dont think i can wait for so long, i keep on getting more n more sick that i think ill be closer to my grave than to a trial date, i think they take their sweet time knowing our lives are at stake, i wish they(companies) would walk in our shoes for a week so they could feel our pain n suffering we go thru on daily basis.

Small weave harbors bacteria nicely is my understanding and provides a host for biofilm…..Contracting or shrinking mesh also entraps nerves, which has een shown at past trials. Could that occur with a larger weave in a mesh placed transvaginally? Probably.

In Science during research there is usually a control to judge the results of experiments. Plaintiff lawyers need to acquire the control for vaginal mesh of all brands. The way to do this is to find out who the preceptors are for each brand and their percentage of failure post surgery. Then take all the rest of the non preceptor doctors and the percentage of failure post surgery. Compare the two groups of data which should show two very important facts. The first group should be the actual product failure percentages in patients that had their device implanted by a preceptor doctors which are the control group. The second group would be non preceptor doctors and the percentage of product failures in their patients. If you looked at both groups of data it would be very clear to extract all kinds of real time data which would really go far in a court of law.

You are so generous with your time and your expertise alone brings a lot of comfort where it seems that is wanting. Thank you so much.

I know I have a lot of fear when it comes to pain, not just because of the fear of its escalation, or the fear that the lack of adequate medication could very well drive me to suicide to be free of it despite fear of death or angering the old GOD(s). I am afraid others will not believe me, I am afraid to ask for help, to be seen as desperate or needy or without courage. I am afraid the world will identify with the defendants and not believe that these devices could possibly be as horrific as I claim.

The subject of pain leads us to the heart of the paranoia about drug use in this country and how people seeking help with pain are often treated, especially women IMHO. My pain level just in my lower pelvis is getting worse and worse but I have been embarrassed, even ashamed to ask for stronger medication. I have been using my monthly allocation up before the month ends and the last time I went in to fill my script I started sobbing just spontaneously when talking with the pharmacist. She not only insisted that I tell the anesthesiologist I see that I need stronger pain medication but I learned that she also called him herself.

We have learned that there are many different pains and they do not fold into one common complaint of pain. Pain is NOT pain, in truth. It has many faces. I do not know if one medication is expected to treat all forms of pain but the truth is that it does not. I am tired of seeing conferences listed on “How to address the problem of pain management” or “Alternative Treatments for Chronic Pain”, etc. Those in pain are discriminated against, not taken seriously, ignored or asked to tap the palm of their hand with the opposite forefinger or hug a tree. Alternative therapies have their place and are effective in certain situations but pain is not “beige”. It is complex and variable and in many ways like a moving target. Sometimes when it is really bad I find myself for an instant, still, and do not sense it. It is as if I am hiding from it, and I hold very still hoping it will not find me but it always does. Sometime just rocking helps for some reason, sometimes hugging the horses helps but sadly, for the most part it does not or it does for a short period, perhaps due to endorphine release or simple distraction of the conscious mind. I have what I call my “Pain Toolbox” and I use all of those tools at different times.

But when it comes to medication, having a pharmacy that knows you, that you trust, is such a blessing. My pharmacy has done many things for me that none have ever done before. This is one reason why not using a mail order pharmacy makes sense for me, and perhaps for other people with chronic pain and other serious problems. I do not want an impersonal pharmacy.

Sometimes our pain management physicians may offer us several options to try. I have noticed that emphasizes the fact that it is really important for us to be as educated about those options and also possible causal factors so we can have an informed discussion about pain coverage options. I feel like my pain mgt. doctor appreciates the fact that I make this effort and do not leave him alone with the burden of decision-making.

On October 30th I see my doctor and will have to find the courage to ask for stronger pain medication, knowing that he is watched by DEA and other entities whose paranoia about prescriptions for “controlled substances” seems to know no bounds.

I have come to believe that this country would rather see us suffer than allow pain coverage that we really need simply to satisfy their own job requirements. I doubt these people have much medical training but I do not know.

I have to take a special bus 30 miles and then a local bus, sometimes two, to get to my doctor to get the script which I then have to carry to the pharmacy to fill. Because my doctor understands my circumstances I am not asked to do this every month but many people are forced to. I am allowed to have appt.s with him every 60 days and he gives me two scripts to take to the pharmacy. Here is an example of many of us must face: This month I will go in on the 30th for a 4:00pm appt. By the time I get back to the hospital pharmacy it will be after 5:00pm and they will be closed so I will not be able to deliver or fill my script that day. I am going to call the pharmacy and ask if I can place the script in an envelope under the door with a signed note. I will then have to pay $6.00 to have a messenger deliver it to my home the following day they are open. Fortunately they are open Sat. but still I may be without pain medication until Monday. This is the kind of thing we who are in genuine need have to face over and over now to get pain medication we desperately need. We have to do this because of our paranoid Government.

There is unquestionably a serious drug problem in this country but it is not our fault yet we suffer for it. This makes it increasingly important for us to see pain mgt. physicians whose integrity is beyond question. I have learned that if the pain gets bad enough for long enough I will probably do anything to alleviate it, from taking other medications at the same time, to drinking wine or rum as well, to even suicide if driven to that. Drug addicts will also do anything to get a “fix” including robbery, bodily harm, even murder. You do not need to be supremely intelligent to see the clear similarities or the distinct differences in these two groups. Why then are those in pain made to suffer so much? Most of us do not have personalities that put us at risk for addiction. Profiles can be done to identify those that are.

There is another point that must be made. I would guess that all polypropelene mesh victims have been diagnosed with Depression and probably Anxiety because of the impact of this material/”device” on our lives if for no other reason. It has become pretty clear to me that when someone has a diagnosis like this and they are suffering from chronic pain, the tendency, especially if they are women, is for the medical community to under treat their pain because of the co-morbidity of having the understandable diagnosis of Depression and because they are more concerned with covering themselves than treating the patient need.

I am fortunate to have a pain mgt. dr. who believes in me, trusts me, and sincerely wants to help but despite his impeccable credentials and integrity he even told me he is closely monitored by DEA, etc. This must mean all anesthesiologists are. This takes the joy out of his job, it robs him of fulfilling his mandate, his sacred mission, to help alleviate pain in his patients, and it would impede his ability to be the best doctor he can be in general.

When I was implanted with this horrific device my pain was not addressed and I was even lied to about it by a certain “Dr. Baxter” at UCLA Urology. This is documented. When I had a total hysterectomy several years earlier my mother complained to the nurses when I was in recovery that my pain was not being adequately treated. This too was at a large highly regarded teaching hospital so it is not a problem only in small corners of the country or mediocre hospitals. Once I came into the local ER with Ischemic Colitis (Food poisoning). Once admitted the hospital would not treat my pain at all because the staff or the primary care doctor I had at the time seemed to have forgotten I was a patient and did not or would not authorize treating my pain. The hospital scrambled and found another physician affiliated with the hospital to come in and treat my pain. There is no excuse for this kind of thing. The most important thing is treating the patients pain, not making sure the administrative details are all in order.

Blaming the victim is not going to solve the drug problem in this country but it does seem to be the path of least resistance for a government that is failing its people on so many levels.

I may not look like I am in pain just as the plaintiff in this case may not have looked like she was in pain to the jury and this is a common complaint among mesh wounded people; that other people can not see their pain so assume it does not exist or has been exaggerated.

In some ways it is a lot like faith. At some point you just have to believe me when I tell you I am in pain. We must give the plaintiff the benefit of the doubt….innocent until proven guilty applies to both parties. There was a grave failure here, and it has implications far beyond the court room.

When someone asks about the pain and what it is like I ask them to gently pinch between thumb and forefinger a small amount of skin on their inner thigh then slowly start pulling that skin away from their leg til they can’t tolerate it anymore….then I ask them to hold it there forever! Everyone’s point of tolerance is different but the pain is undeniably real! Or what happens when my hip cocks and I am not level I ask them to imagine the sensation of when a catheter is pulled out…just that last little bit when it clears and it hurts so much….but it doesn’t end just keeps coming over and over til you feel like your urethra is being ripped out! Men and women can both understand the intensity especially when you say it’s in my pelvis…I can’t massage it, rub it or release the tension, it’s just always there! Find a real dr and if your rectum is involved go to a colorectal surgeon…never give up looking for answers!

I wish I could say yes…still stuck in the middle! The colorectal surgeon at Rush who is the head of colon and rectal research and education is adamant that the mesh be removed from the rectum, the pain is phenomenal! My urogyn surgeon who removed part of it to cure the rectal stricture/stenosis it caused is still searching and found me a dr at Kansas university in Kansas City, however he won’t see me until I go back to a colorectal surgeon who can figure out how and what to do and advise him….it has to be a joint surgery between the two because of the damage it is going to do to the rectum when the dr removes it! After a trip to the ER Friday to make sure my rectum didn’t rupture I have an appointment with a colorectal surgeon in a week! I was advised not to bend push pull lift cough sneeze or bear down while going to the bathroom and I have to take stool softeners every day until my appointment just to keep it from rupturing! Most people don’t realize what will happen if your rectum ruptures! I search every day for answers….I am hoping this isn’t happening to anyone else but also hoping that if it did they can reach out to me and tell me what they did and who they went to!!!

Anonymous- Have you had to change your diet too to keep a balance going? Please let me know the names of your docs. I know another woman in a similar situation and she could use some good medical providers. Best to you in your search for a return to health!!!

Dear Anonymous, I think you would go into septic shock and that is considered a medical emergency in some circles. You could die. I wish I could do something to help…all I can do is pray for you and lets all pray for our sister Anon., especially on Friday.

I start feeling sorry for myself and then I read something like this. How many of our stories are heart wrenching…are they all? I think that suffering does affect even the brain. As I recall when there is trauma, regardless of weather it is physical or psychological there can be damage to neurons and a sort of failure to thrive in the brain, loss of white matter and if severe enough even early onset of a type of Dementia. I speak from memory only so anyone interested in this should read more about it themselves.

Children who suffer from the abuse of neglect of family members, for example, can experience alterations in the brain that have some permanence and cause them to be less able to do as well in all areas of life and a kind of chronic low level Depression. Depression tends to reinforces this cycle.

What we say to our children and to each other can have this kind of impact on the brain regardless of the stage of life so the old saying “Sticks and stones can break my bones but words can never hurt me” is not really true. In many ways we are very fragile.

It has occurred to me that human beings who are implanted with this petroleum bi-product suffer also from this kind of pain…a kind of pain that is never mentioned in trials or even acknowledged as existant.

I wonder if the defendants would even implant children if they could. Perhaps they have. If they could find a new market for their “product” I do not doubt they would exploit it if not in this country then in less sophisticated cultures.

They believe that if you tell someone something long enough those people tend to begin to think of it as the truth and that is one of the chief goals of their marketing department: The psychological manipulation of the public. The defendant corporations even use this on their own employees in their extravagant team building and motivational gatherings of their sales teams that form, if I may, the body of the beast. I had a nightmare that they “developed” a drug that came to be used as widely and commonly as aspirin. We learned way to late that it was making our sons and daughters infertile. No more babies were born to human beings. We had finally rendered ourselves extinct.

Be prepared when you have this condition that you cannot leave home on the day after (evening) that you take

Dulcolax—it gets it all out. –I mean all day. Wear a diaper if you have to because no doubt you cannot hold due to spinchter damage or whatever.

Bejah Blue
October 30, 2015 at 2:49 pm

Kitty (From Oct 21st or so, I wish when we were typing comment the original we reply to appeared just above so we could refer to it)

Re: Dulcolax…I have taken two at a time every three days and nothing….GI doctor told me it is better to take a stoll softener like Colese (sp?). A friend told me just the other day that she buys very large bags of frozen mixed vegtebales (Not the cheap carrots, peas and string beans one, but the bag that contains a lot of other vegetables like squashes, parsnips, etc.) and she will include a big serving of these vegetables with her dinner almost every night and this alone has made a considerable difference. I like this idea better because it is just food and good for us.

I believe that we should eat far less red meat especially now that we know the petroleum bi-product the defendants intentionally manufactured to implant in our bodies releases toxins into our bodies as it decays over time. Most red meat, certainly beef, is riddled with growth hormones and antibiotics that also create toxic problems and if we eat red meat now we are probably putting ourselves at greater risk.

I love pears and know we should be eating a lot more vegetables and fruit including berries, and a lot less meat. I am guessing most of us can not afford organic beef. We have to be careful about fish now also. I took notes while watching PBS at 3am this morning (Can not remember the last time I slept through the night). Here is a little of it that may be helpful. First it was a program called “Effortless Healing”, and presenter was Dr. Joseph Mercola.

* Fish is full of industrial poisons and farmed fish is worse. The fish is fed with GMO grains (Genetically modified food grains). The larger the fish, the more poisons it may contain. I have heard that it is best to eat the part of the fish that is the most distant from the head but that may just be an old wives tale. Eating smaller fish may be best.

* Krill oil is the best fish oil to consume. It contains, for one thing, an antioxidant that protects its fat from damage so it will not go bad

* Processed vegetable oils are bad for us. They contain transfat (Canola, corn and other oils) and heating them makes this worse. They are GMO foods that are soaked in toxic herbacides that can not be washed off. They are loaded with Omega 6 fats which promote inflammation and contribute to insulin resistance. Instead use olive oil, coconut oil (not coconut milk as it contains a lot of sugar), and other good oils including nut oils and other good oils. I love sesame seed oil. It has a beautiful color and a rich nutty flavor. It is expensive but it goes a long way. A little bottle is about $5.50. I love to sprinkle it on white fish before broiling….makes the fish a beautiful golden brown crusty health food but take care to keep the heat on under 400 degrees or cook very fast on higher heat if you can afford a high end range. These days I feel lucky I do not have to use Sterno!

* The other day on another PBS program about living with ADD the doctor/host mentioned how wonderful walnuts are and how they actually look like the brain which I thought seemed very interesting. Also really good for us and even though these nuts are expensive we need to remember these days especially that food is medicine. Remember too that it is the same evil players that present us with bad foods (GMO, etc.) that also implanted us with these murderous devices. I do not think that any of us want corporations producing our foods, especially now.

* This blew me away as they say….Know the old saying that breakfast is the most important meal of the day? Guess what. Evidently that notion was developed by the advertising and PR departments of the manufacturers of breakfast cereals which the last time I looked took up a whole isle in the supermarket. They want us to eat their cereals every morning. Per the author/physician of the above referenced PBS program, eating these cereals every morning contributes to insulin resistance (I think this is problematic for people with Diabetes (Now a big problem in this country). So they make us sick and then produce medications to treat those sicknesses.

* The recommendation is that we not eat three meals a day but I will leave you to research that on your own. I have heard that several small meals is better for our digestion but that is not exactly what is recommended by this doctor, nor is it discounted, rather he has a different proposal focusing on reducing the window during when we each every day.

* He suggests that we eat a lot more vegetables. Because I am finding I often do not have much energy to cook in the evening especially now that it is getting darker earlier, the idea of preparing vegetables is very appealing as it is simpler. Now we (The dogs and me) have dinner about 4pm, first they eat their dinner and then work on mine!

* He also said that it is good to not eat for three hours after waking in the morning because this awakens fat burning enzymes.

Finally, a personal note. A spent a few weeks in Indonesia in the mid 1990’s and I learned to eat differently, just naturally and the fat just melted off of me. I also lost my taste for the traditional American diet. I found myself eating steamed fish and vegetables in the morning, and yogurt and fruit mid day. For dinner I often had either rice and vegetables or a wonderful soup. I also felt much healthier. I did drift back into the American diet to some degree sadly, but now I am rethinking that.

Hope this is helpful. Maybe we should develop a “mesh diet” which would probably be a lot like the Intersistial Cystitis diet and perhaps with elements of the Mediterranean diet. I do think we should all take multi-vitamins. I also take other things like 10,000 icu of Vitamin B12 every day (2×5,000 am and pm), Vitiman D, Vit. B Complex (Which I find very helpful for Depression), and some other more exotic supplements. We need to take extra care of our immune systems to address the probable contamination by toxins. Clearly, no one is going to help us so we must help ourselves. We have been betrayed by our government, the justice system, and in many cases by our own physicians. We must look to ourselves and our community for guidance and care.

I was thinking about the defendant corporations this morning for a little bit….the individuals really responsible within them. There is nothing, no amount of money or power or influence that can shield them from suffering or sickness or death. We should remember that and take comfort in knowing that we have done nothing wrong, we are innocent in this, and even when it is hard for us to believe, the Father is with us. The perpetrators are ultimately alone in ways that we never will be. When we think that “the body is the temple of the soul”, and that it is really the cradle of life, it helps us understand how precious we are to GOD, and how important it is that we take care of ourselves, the ravaged bodies and spirits, because the defendants have wounded GOD in wounding us, but we are still here and must continue to care for our bodies which are still sacred vessels. It makes the unfathomable violations we have suffered even more difficult to comprehend.

I don’t want to keep calling out the jury , but are they humans. Everyone here has great points . You all have touched a lot of important factors . But yet again are they human. The lady is 65 years old for god sakes.

I hope by Dec those attorneys are ready and willing to found all the right issues and discuss them in layman’s terms perhaps.

Did her attorneys fill a appeal . All we will keep doing is hope that we can have our justice from these money laundering crooked thieves that never get caught for their crimes . These corporation never go to jail . These corporations never pay for there wrong doing .

Bejah, it was hard to read your post.,such despair intertwined in the words. Im so sorry you are in such a bad place. Below is a link to the new National Pain Strategy draft that will be released soon. While it is still a draft, reading it will give everyone a better understanding of where we are going on pain management as a nation. i was on a committee of people who are working to increase the awareness and treatment of pain that provided comments to the draft. It was eye opening. Narcotics for chronic pain will be even more difficult to get when this plan is implemented. Pain is being viewed as a biopsychosocial issue and treatment for pain will use that approach..it will focus on pain assessment, educating about the pain mechanisms in our bodies, and counseling to develop self-management skills , such as biofeedback, CBT, some complementary and alternative approaches., it will call for a cultural change in how pain is assessed and treated. While opiods will be appropriate for acute pain, they recommend a reduction in using opiods for chronic pain. There is the potential for those in pain to be under medicated during this philosophical but very real transformation. But, knowing this in advance will certainly give you the opportunity to have a very open conversation with your pain specialist. Being prepared may help you be prepared for this shift.

Why don’t you ask theses so called jurors after hearing all the testimony. “Would you allow one of these products placed in your body, after hearing the evidence shown today. Would you agree to this product being placed in your spouse, knowing that your intimate life will be over? Your mother, would you allow this, knowing that is going to cause her chronic pain, increase her arthritis, and cause other health issues? For every no that is a vote for our mesh victims. Come on you so called jurors, look at what this product is doing. They would not be so many women filling complaints, if it weren’t real. You has rather settle 100,000’s of cases on cell phone insurance, or a company that’s gum didn’t taste right. I hope you are never facef with a mesh implant, but then again you will get what you deserve.

The pendulum swings from prescribing pain meds generously to denial of pain medications (that work) to mostly women. Men don’t seem to have as much of a problem getting medication to relieve their chronic pain as do women. Hmmmm… (profile of the current prescription opiod is white, female, 30-50, and or “soccer moms” whatever those are)

If we could ever get to the point of medical doctors prescribing pain medications “judiciously” based on their knowledge of the patient, the problem of prescription opiod abuse would return to the level at which it has always existed (and it always has).

This would require the physician to actually spend time with the patient to know them and their medical history. That’s not going to happen. It’s a minimum of 3 patients scheduled for every 15 minute time slot. That doesn’t equate to 5 minutes per patient. The physician has documentation to do and questions to answer from nurses, etc. So 2 minutes between patients leaves 9 minutes for three patients.

That’s what got us to this point. Do I blame physicians? Not entirely. I do blame practices that require a unmanageable caseloads and poor insurance reimbursement requiring more patients to make enough to stay afloat.

What swung the pendulum back to prescribing pain meds was litigation. Numerous cases were filed and won claiming that physicians under treated pain and caused undue suffering. That’s what will happen again and the pendulum will swing back. Unfortunately, a whole lot of people will suffer in the interim.

It is so disgusting—especially for Cancer patients The drug dealers and addicts are destroying the country. HaS THE LETTER BEEN DRAFTED FOR D TRUMP? This is another issue he could be informed of. Of course he has never taken a drop of liquor, wine or beer to his lips

Kitty. Just wanted to clarify regarding your comment about cancer patients. Cancer patients will be able to be get the pain medication they need to be comfortable. The biggest shift is for those like the readers here who are on long term opiod use for chronic pain ( pain that lasts 6 months or more). More and more scientific research implies that long term pain managment using opiods is not in the best interest of the patient because of what narcotics use does to the body physically and mentally. There are solid arguments on all sides of this argument, but the fact is that this strategy will become the policy and,everyone who has a long term opiod use for pain will be reevaluated. My advice for everyone is to keep a very detailed pain jourrnal that includes when you have pain, what you were doing up to when the pain episode occurred ( were you lifting, traveling in a car; did it wake you up from sleep or while exercising); your diet since dairy and sugar are known to fuel inflammation (pain); other things you tried to address the pain ( stretching, heat, ice, behavioral tools such as meditation, mindfulness) and if any of these gave you any relief; what kind of pain it is ( throbbing, piercing, burning, etc). You can find pain journal templates on the internet). This is important so that your doctor can have a detailed history of your pain and it can also tell you what triggers your pain. Having this in hand will help you and your doctor make important decisions about your pain management options, which may include narcotics but I assume you will be directed to explore other options as well. Believe me, other people with chronic pain are concerned about this, too, so it will be interesting to see how this strategy will actually be implemented and how it impacts actual people. However, being prepared with your pain journal can certainly help.

What do you mean by who am I ? Although I post anonymously because I am involved with litigation, I am, like you, a mesh injured woman. Eght major surgeries since 2009, my last three weeks ago. Many were brutal. However, I also happen to be a pain management educator and researcher, so I have some unusual credentials. I Have a Masters degree in psychology with a focus on the experience of pain. I try to apply my knowledge about pain to my own situation and learn from it. Jane has seen my credentials and can vouch that I am not a spy or pretender.

Jane Akre
October 28, 2015 at 11:20 pm

I totally vouch for Still Standing as a mesh injured woman… .very educated in pain management….. ~ jane a.

Dear SS, You will be happy to know I am creating a pain journal template using your suggestions. I have run into a problem however that I am working through now…we have many sources of pain concurrently, and journalling about these differences is getting complex but the distinctions are important so I am trying to figure out how to produce a meaningful way to capture this (if you will) 3D picture of the pain spectrum at any given time. I will be happy to share the results if I come up with anything worth sharing. Thanks, as always.

I think a pain journal will help you and I understand about the co-occuring pain areas. My suggestion is to focus first on the area of your body where you are experiencing the most intense pain. Just lie down and get quiet for a while, notice your breath and let your body tell you where it is hurting the most. Notice everything about the pain. Is it constant? Does it ache or throb or pierce, for example? Get to know this pain first. This is important because when we hurt, we tend to try to shut it out, pretend it isnt there. . By getting to know and understand this pain, you can begin to face it down. Notice now any pain that radiates from this pain. These could be referred pain or trigger points. Do this for a few weeks and as you observe your pain in this way you will begin to identify the parts of your body that you are bracing when you have pain. Do you clench your jaw, fold in abdominally, tense your shoulders,hold your breath? Is it worse when you have stress? Just notice without trying to do anything about it. By creating this awareness of your pain in an intimate way, you will begin to understand how your painful areas are connected and you have a clear picture, 3D, as you put it. it will become a deep narrative about your experience of pain.

Kitty, I am sorry I have been distracted by my own situation, and I should utilize this as an opportunity to refocus my attention away from my pain to helping someone else to see if that helps my own pain or at least the perception of it. Thanks for the gentle reminder, truly.

Lydia, This is very disturbing for many reasons. The woman’s credibility is severely damaged although it does not seem to me to be relevant. Damage in surgery to a patient, regardless of their moral bankruptcy, does not really have anything to do with a previous accusation of murder or anything else. Her situation damages us all because the defendants have long wanted to paint us all with dark brushstrokes. Why did her counsel even take her as a client. When I read this summary, I still see a witch hunt. To dismiss a plaintiff because they have been diagnosed with Depression and/or Anxiety is morally, ethically and legally wrong. But she has caused us all harm by bringing this suit. I have no sympathy for this person. BUT, be careful people, because they have us all in their crosshairs. Remember the old advisory, “There but for (good) fortune, go you or I” meaning that if those in power can dismiss a case because the woman was depressed or suffered from anxiety what else will they do. Now, anyone who claims Depression and/or Anxiety will be in danger because this case will be referenced for its judgement call. I see many armies standing against us, none with legitimate claims, but all aligned.

After speaking with someone who was involved with the AMS coming to settlements I’m so confused and want to through in the towel!! Any issues we had before these defective products were inserted will not be considered. Example SUI POP and these devices failed, infections previously, nerve issues ect! We cannot file any form but she was going to check for future surgeries. The only thing that is going to be considered is anything we have, pelvic pain, no intimacy and not sure of any other injuries! The cap already involves pain and suffering, quality of life, age is also going to play a role when it was inserted! Our first surgery will not be included only revisions, if we had surgery after the deadline we need to appeal which my law firm will do, we will continue to have several issues, we will need SUI-POP repaired I did not have POP prior to however she said I did. I thought that if you were on disability that we would be able to keep mainecare, she told me when we get our packets it will explain that we will need to have a structured settlement. Also being in these categories some may get more some less, I was not given the injuries they are associating with this BS!! Government insurance can take 25% to reimburse what they paid hopefully just revisions!! They are a little behind however they want this over and everyone paid by December 2015 January 2016……………….

Being told so many different things by law firms who represent you is not my idea of a firm working hard to get the best compensation………..

This strategy pretty much is the final word. It is defining pain as a distinct disease on its own and also as a public health epidemic. It will drive other public health policy and, more importantly, funding for scientific research. As someone who has done research on pain, there ARE significant things that pain causes on a biological level, how it changes cellular function, hormones, even brain white and grey matter, so there is a good argument for changing how we think about and treat chronic pain. While narcotics address the real time symptom,they do nothing to alleviate the next pain episode. Once again, I urge anyone who depends on narcotics for pain management, to begin now to explore all options for pain management with your physician so you are not set adrift as this policy is implemented. I will tell you that my treating urogynecologist does not think narcotics are the best way to manage this pain because of how they impact long and short muscle groups differently. Consequently, I have not relied on them for pain management except very short term during the aftermath of my 8 major mesh surgeries. So, it will be important for you to remain open to other modalities to address pain, BUT to also be a clear advocate for what you need for YOUR pain. While I dont agree that mass panic will set in, I do agree that those who will be impacted the most ( high responders to pain) will feel marginalized and experience great anxiety about their own pain, which, increases pain. Just stay abreast of how these changes will be implemented. I will try to keep the readers here informed.

StillStanding, There are problems with both arguments regarding pain. I believe, for example, that the chronic use of opiod pain treatments can make constipation more of a problem and that can then cause a cascade of other problems. Gastoenterologists will recommend the use of stool softeners rather than medications that induce emptying of the bowels as the impact on the body is reduced. On the other hand, not addressing pain adequately can cause a troubling increase in blood pressure, inhibit healing and a different cascade of problems. That is why I have what I call my “Toolbox” of pain and other medications. I want to conceptualize pain as something that I can have some control over, something that I have a variety of methods of treating. But I also know that it is unlikely that I will ever again not be in pain. Stats show that the thing that people fear most is not dying, rather it is being in pain.

The government response to the use of pain medications does not appear to me to address human need, or even consider the individuals suffering. It seeks to address economic and political loss which we might equate with the pain of the nation, the government of that nation, not the people….and this is curious to say the least when we consider that it is the economic and political forces of that nation (for example, Johnson & Johnson) that cause the pain that creates the need for pain medications in the first place. How many ads do we all see now on television or in print for drugs and at the same time advertising proposed lawsuits against those manufacturers? Follow the money, I guess.

The bottom line is that the people continue to suffer. The state seeks the same thing that individuals seek…power, control…in the case of the individual that is power and control over their own lives. But the state has more power and seeks control over the individual and to have the ultimate power. It is mandated, in the case of the individual in this country, to protect and defend their inalienable rights but instead it protects its own interests at the expense of individual rights. I believe that in doing so it is self destructing, ultimately fulfilling the will of terrorists and those they serve..

When I told a friend about this she suggested I may want to consider marijuana if they are going to prevent us from receiving narcotic pain medication. Do they intend to prevent access to this as well? As I understand it, at this time states determine if medical marijuana is allowed regardless of what the Federal Government says.

Maybe I will have to consider moving to a foreign country where I can receive better medical care as a person with chronic pain, pain that I suffer from as a result of the failings of the same government that allowed mesh manufacturers to get away with murder and now will forbid me from receiving pain medication for the damage done to my body.

I was just giving the most upsetting news by my primary care doctor. First of all he took 30 minutes from his lunch Tuesday and said he would try and help me with founding out what going on with my pain . Then he stated while looking at my chart that I wasn’t on a lot of pain medication , because they all make me very sick and start to hemorrhage . My stomach has never allowed more then 3 pills in a weeks time . Then he said I needed to be on more pain killers to prove im in pain . Reason being in tx i went to court for ssdi and was told my primary care doctor has to file out a form . Now understand me I’ve been fired , my home is in foreclosure. The judge here said send me your papers after your primary care doctor has giving you a physical . Back to my primary care doctor he said come back in the morning I’ll have time to see and address the papers and you . Well he was ready and so was I Wednesday morning . We started with the first question and after the 7 questions he stopped and said you women are trying to get doctors to fill out forms so you can just sit it home . Then i took out all my medical treatment, surgeries and started on him ,i told him how you a primary care doctor of mine for over 6 years was just here for a circus act . You couldn’t fill out a form if you tried because you know you are all afraid of your own lies . How could you call yourself a doctor based on not understand the difference in your patients behavior and physical activity . I explain to him that he was blind in one eye you can clearly see I don’t sit up straight, don’t walk normally,and complained repeatedly about pain when i move around . So he stated I should found a bunch of specialist all over again then bring him all the paper so he can make notes . Sorry to say dr. clay Ung you should return back to school as well as the rest of the medical industry that only use the word doctor for insurance fraud and pharmaceutical gain to keep women , humans for that matter under control . I never knew doctors were Dictators and Control freaks . I never had a issue with my body like this before and have over 8 doctors say nothing is wrong . I guess one of his investments is vaginal mesh alone with the rest of the world medical industry .

Time to STOP complaining, Ladies – time for action. “Praise the Lord and Pass the Ammunition”! It’s “go time”. No more stories of our pain – STOP being mad – just get EVEN! PUT and end to the blah, blah, blah from lawyers and doctors. Let your lawyers know that they MUST STOP wasting time our diminished time and “our” money due on foolish trials that are NOT representative of the truly injured. A little “inspiration” music link….

Still standing that is a nice pain graph. Many of the ladies are much older ladies and have limited times left—-it’s doubtful they will turn to heroin or cocaine. Most likely they will sign themselves into an asylum and live out their days.

Well, Im well into my 60s but I’ll be damned if I let this thing diminish me and my life. We must choose to live everyday with purpose. Perhaps we wont have the same purpose as before the mesh , but we can all find purpose for today, in the present. Mesh may have put limitations on our physical bodies, but we can still love, we can still smile, we can still encourage others, we can still appreciate the beauty around us, we can still watch a sunset with awe, we can still stop and smell the freshness of the rain, we can still delight in the hug of a precious grandchild, we can still fight for what is right, we can still cry in joy and in sadness, we can still pray. We CAN because we MUST make the choice to fully live in the present. No, mesh will not ever take away my joy. It has taken a great deal from me, but I refuse to let it take away my joy and hope. This doesnt mean that I dont have days of great despair and anger. I give it a few days of my life, but I dont give it my life. Unfortunately, we can’t go back and undo the mesh and we cant predict what the future will be, we only have this present moment. How we choose to be in this present moment is all we have control over and right now, Im still standing and grateful for each breath.

I agree with you were still standing, n yes thank God for everyday we take a breath, lets pass on a smile n good n blessed greetings to all we meet along the way, keep the beautiful thoughts of life while we have it . God bless us all injured or not.

I am writing this in case it may contain some information that may be helpful to someone in our community. Yesterday I had an appointment with a spine specialist I have not seen for several years. I went to him because I have experienced limping in my left leg. I was surprised when he gave me a prescription for Tramadol which I understand to be a mild pain medication. Did he not see from my medication list I was taking a strong narcotic pain medication? I will fill the prescription and put it away for emergency. He also gave me a script for physical therapy. That will probably be helpful. He can not determine the cause of the limp and associated pain but suspects lumbar nerves and a strictly spinal problem. Maybe the PT can help pinpoint what nerves are involved. I always fear now that everything may relate back to the mesh, to the leeching of toxins, something.

The real horror was my appt. with my pain mgt. doctor. He said when I was sitting there that he was going to give me a stronger pain medication. I was in a hurry because I needed to get to the pharmacy before they closed so I could refill BP medication script. I did not tell him I am now also having more muscle spasms in my legs, and even under my right arm and in the left side of my stomach. I sometimes have a terrible fear and one day the muscle spasms will not stop and I will drop dead from that pain. I did not look at the script he gave me until I arrived at the pharmacy just after they closed. They let me in. I took out the script. The doctor had not changed my script at all, the dose was the same as it has been since I started seeing him. I felt so betrayed. I read the accompanying review of my visit. It contained misstatements. For example he indicated that I said that the present theraputic effect had increased. I never said that, never wrote it, never alluded to it. He lied and he did not increase my pain medication as he said he was doing. More betrayals, more lies. How could this be happening. How insidious. Monday I will call him and demand answers. I can only pray it was a terrible mistake but now I must search for a new pain mgt. doctor. Be careful what you say to them, and even what you write on forms they may give you at each visit that ask you to quantify your pain. Ask for copies of these and bring those with you the next time you come and refer to them when you are filling out the current one. Question any errors immediately and demand they be corrected. If they refuse to make corrections add a note yourself that describes that situation and add it to your file. I am also increasingly convinced that many physicians basicly leave old people to die, just doing simple inexpensive maintenance treatments unless those people can pay cash, demonstrating economic or political power.

One more thought….there were extravagant posters for implantable pain reducing medical devices in the pain mgt. doctors office. Is the FDA eliminating support for narcotic pain medications to try to shift people in pain to using implantable devices like this which increase the wealth of corporations that produce these devices and eliminating any viable pain mgt. alternatives for patients? What fresh horror is this?

I took tramadol after knee replacement. Took it–i ink every 6 hrs? Then I went off of it. It was the worst drug wth drawl . It took about a week. THE ANXIETY FROM WITHDRAWAL WAS ALMOST SUICIDAL. ALSO AREN’T THE IMPLANTABLESLadies—take care now—big cuts and services in Medicare 2016 FILLED WITH MORPHINE?

Thank you Kitty. A friend told me she was given a script for Tramadol for shoulder pain once. She said it was very mild. The pain mgt. doctor I was seeing told me Friday it would have no effect on me at all, it would be useless, he said. Still I am going to fill it and just keep it on the shelf. I do not believe that medications just “Go bad” in the time they say that they do. I believe they probably lose potency over time and perhaps some can be refrigerated.

My friend also told me that she knows a woman from church who had an implanted pain treatment device. It failed, has malfuctioned in many cases, there are lawsuits she said…about that device also.

I talked to my pharmacist this morning. He thinks my pain mgt. doctor made a mistake. I will call them when I feel stronger, later today. I went to reread the basic medical profile of this doctor. Evidently I missed this when I first went to him….he is a Physiologist????? So he is not even an MD???? How could I miss that. Need to go read about that kind of heath care provider, never heard of it before.

I keep thinking, how could a doctor tell you he was increasing your pain medication dosing and then forget to do it? How could that happen? Especially with a “controlled substance”…

Hi Bejah. I’m sorry you’re having such a difficult time with pain, medications and physicians. I was hoping the new Urogynecologist would provide more answers and hope for you. I’m not a doctor and believe second or even third opinions are often necessary in diagnosis and treatment, but I agree with your doctor and Kitty regarding Tramadol not being the best option for the type of pain you experience. In reading many of your comments, it seems as though your nerves are affected by the implant complications and causing additional pain.

addison
October 27, 2015 at 5:05 pm

Bejah, if remembering correctly, you struggle with erosion or another complication but can’t safely experience removal operation. Is that right? I’ve read about your malformed organ(s) and am sorry to hear of this, too. I wonder if something further has occurred. You had a recent scan, but MRI’s and CAT scans only show so much. None of the remaining pieces in my body can be picked up or seen via scans and ultrasound. Have any of your doctors discussed the possibility of a portion pressing on or compressing a nerve? This can cause a tremendous amount of pain.

Bejah Blue
October 27, 2015 at 8:55 pm

Dear Addison, Thank you. That Tramadol was only to address pain from the L4 spinal nerve which presents the doctor said in the front of the left thigh after wraping around but if I am taking a narcotic pain medication already the Tramadol would have little effect I think. I had not seen this doctor for several years and he did not know my recent history. I will just fill the prescription and save it. I will accept pain scripts just to have on hand for emergency but it sounds like I will not even be able to fill more than one at a time from now on. What are we supposed to do it there is a natural disaster and we would run out of pain medications…I wonder. Guess “they” don’t care. BTW please tell Jane it is OK to give you my private email or phone if you still want it. She is not getting my email for some reason.

Bejah

Bejah Blue
November 3, 2015 at 9:31 pm

Hi Addison, I am not seeing a Urogynecologist. There are not any in the area where I live as far as I know. I have seen only Urologists. The most recent one ordered a CT which the Radiologist said did not seem to explain my symptoms. I am left wondering what CTs do not “see” and what other imaging may be appropriate at this juncture. I do not know if a translabial ultrasound is something that might help or even if that equipment is available in my area. It is my understanding that if there are a lot of adhesions that would cause considerable pain, perhaps increasing over time and that they can not be detected using any of the imaging techniques currently available. I also continue to wonder if my bladder is suspect. Again, all of this is post implant. We must always remember the importance of sharing…what happens to one of us can help others and hey, “misery loves company”, right? 🙂 Thanks Addison.

Regarding the decreased effectiveness of your medication, Bejah, this could signal a worsening or new complication, or it could be from opioid tolerance or opioid-induced hyperalgesia. Have you tried Lyrica, Neurontin/Gabapentin, or Cymbalta? These can help with nerve associated pain, but some can’t take them due to side effects. My opioid medications and others help, but we haven’t found anything to bring pain to a consistently low level. I’ve also not heard of a patient being told he or she needs an increase only to experience what you have. It’s no wonder you are worried and confused.

addison
October 27, 2015 at 6:24 pm

Sorry! I can’t type much without the “submit comment” box disappearing. I’m clearly doing something wrong. Bejah, is the doctor you see for pain management a Physiatrist? The word definitely looks similar to “Physiologist” and “Psychiatrist.” A Physiatrist is a medical doctor who diagnoses and treats pain. According to the American Academy of Physical Medicine and Rehabilitation, “Physiatrists, or rehabilitation physicians, are nerve, muscle and bone experts who treat injuries or illnesses that affect how you move…”

Bejah Blue
October 27, 2015 at 9:02 pm

Addison, I am very careful about avoiding dependence. I generally have not taken anything in the night while sleeping until very recently when I wake in pain. I wonder if it is due to adhesions. In answer to your question, I have taken Neurontin in the past but now I wonder if it would be strong enough. Is that a controlled substance? If not then maybe I will have no choice but to add that again to my little “Toolbox” of medications. I liked the Neurontin just for the record and would recommend it to others. I think it was prescribed for neuropathic pain in my legs originally. How would we identify neuropathic pain elsewhere in the body I wonder? Would it present as it does in the legs? I must read more about this. I remember that heating pad seemed to help. Must get that out again now.

Bejah

Barb
October 28, 2015 at 9:51 pm

I think we are missing the point here when it comes to pain management. Don’t y’all have an opiod contract with these doctors that you signed?? They can ask you to bring them in to count, do random urine test?? That’s what mine does, and if any operations he/she would be the prescribing doctor of your meds not the surgeon doing the oeration! If you go to the ER yes you can take the pain meds they give you there however you cannot take a prescription home. I know if I break my contract my doctor no longer prescribes and then that’s when people go Dr. shopping………..

Bejah Blue
November 3, 2015 at 9:44 pm

Dear Addison,

I know the effectiveness of my pain medication is due to an increase in my pain. I just do not know what is happening that is causing it. That is what is most frightening I guess. I have been taking the same dose of narcotic pain medicine since 2004 when it was prescribed for the pain in my spine (triple major scoliosis, and attendant problems) and I have never asked for an increase until now. It is not the medication, it is not my mind, it is the pain which is the way our body talks to us, let us remember, it is the way our body tells us something is wrong.

am not drug seeking because now, after all these years I say I need more pain medicine. I never have been. It hurts to have people assume such a thing…it hurts a lot.

We are so good at blaming the victim, it is after all the path of least resistance. I say to this nation, “You have stolen my home…protected big banking as they committed egregious cases of mortgage fraud, you have defended and protected corporations that implanted me with life destroying toxic substances, and now you assert that I am drug seeking because I ask to have adequate pain treatment, and then you deny that treatment at all”. These are not the misguided actions of a great nation, rather they are the early death throws of a sick country.

Hi Kitty. I’m sorry to hear about the pain you had when trying therapy exercises. Your new tub sounds so nice, but feeling like that while in it sure isn’t. Were you able to continue therapy, and have you found anything that reduces your pain?

Regarding pain pumps, I will try to explain what we’ve learned from my main providers and neurosurgeon; hope this helps.

During surgery/implantation of the intrathecal device, a pump (about the size of a hockey puck) is placed under the skin of one’s abdomen, and a catheter–connected to the pump–is placed in the intrathecal space of one’s spine. According to my doctors, Morphine is often used. We discussed Dilaudid (Hydromorphone) because it is one of my medications.

With the intrathecal pain system, a much smaller dose of medication is needed to lessen or control pain, and there are typically less side effects than experienced with oral medications. My doctors mentioned the reservoir being filled every 8-12 weeks, but I think this varies per patient or physician. The pump is filled with medication via insertion of a needle.

Implantable pain pumps appear to be a good option for some, but the surgery and device are not without risk. My family and I have come to understand the device and its benefits, and we trust my providers and the neurosurgeon but are scared. A psychiatrist is often involved in the process, and the one I saw was kind, thorough and sympathetic. He wasn’t on board with the pain pump because of my age, chronic infections, and anxiety surrounding the device and all that’s occurred. He mentioned backing the surgery once some time had passed, giving us more time to discuss and hoping some complications would lessen. Even though time has passed and we know the risk of serious injury is small, considering everything, it’s a difficult decision to make and unfortunately can’t fix everything.

Addison, Did you happen to see my post about my now dismissed pain mgt dr. who has ads for this type of pump in his office I think…he told me funding has been cut for it 75% or so….and women I went with told me a person she knows had serious problems with what was implanted in her. I pray you do not have problems but please make sure you know of latest news about the device. I am impressed that you had the courage to do another implant. I pray it continues to serve you well.

Bejah

addison
October 29, 2015 at 1:50 pm

I’m sorry for any confusion, Bejah. I do not have an implanted pain pump and continue with other treatments, including several medications. We are going to start blocks, and in the past, the anesthesiologist has discussed ablation, destroying affected nerves.

Regarding an intrathecal pain system, it worries me, too. I’ve been hospitalized many times in these years between surgeries and infections with accompanying severe pain so my doctors are doing what they can to lessen these and other problems. The neurosurgeon wasn’t pushy and was thorough in the discussion of surgery, experience, outcomes, benefits and risks. He’s a very respected surgeon, and if we ever look into this again, I’d prefer to see him due to his experience and bedside manner. A psychological or psychiatric evaluation is required prior to placement, so it’s nice that no one can jump into without examinations and much thought.

The psychiatrist was nice and sympathetic but did ask why (or how) in heck I’d trust the implant considering the circumstances. I was confused and worried about remaining portions and further erosion or injury and had concerns about the pain pump. My family and I still worry a little, which I think is normal, but we’re informed. At least we know removal of all the anchors isn’t attainable and what possibly can and can’t be done yet. Anchor removal might be possible for some, so I don’t want to cause additional worry. My suggestion is to seek the opinion of at least two experienced Urogynecologists if facing complications or in need of removal operation(s).

Unfortunately, Bejah, if you’re suffering from nerve injury, it can be difficult to manage. This is also true with adhesions. I hope you find out which is causing increased complications. Possibly both? The bad thing about adhesions is that a doctor can operate, but with surgery comes the risk of additional adhesions. There are several things to try with nerves but no easy fixes or guarantees. Even with ablation, we were told there’s a possibility of nerve regeneration. It’s clear you’re seeking answers and trying very hard. I, like you, think prayer is important and will provide some answers. You deserve a good team of providers, and I hope you find a pain management physician who understands your situation and treats you well.

I’m happy to let you know what we’ve tried and learned from my doctors if it can help. Due to what appears to be more than one damaged nerve, chronic infections, retention/catheterizing and other problems, I continue to have pain. Surgeries helped some things, but I recline often and sleep quite a bit when our children are in school. At rest, I have pain, but my medications help the most during these times. I’m awakened with sharp and burning pains weekly–some worse than others–but not every night like prior to the first surgery.

Oh, I read your recent post about infections and agree that cathed samples and cultures are ideal in the situations you describe. Those who feel as though they have infections only to frustratingly learn or hear the urine is free of bacteria might have Interstitial Cystitis (IC). My urinalysis samples are typically from catheterizations and are cultured, but I once saw a physician who, after hearing the number of infections, thought I must have IC vs. bladder and kidney infections. After talking with us and reading some of my charts, he apologized.

For anyone wondering about cultures, a growth of greater than 100,000 CFU/ml indicates infection. Urine is typically sterile, so I think lesser growth of one bacteria (more than one being considered contamination) with accompanying symptoms can sometimes indicate infection and a possible need for treatment. Some seem to quickly fight off infection without antibiotics, which is ideal. Other infections often occur with antibiotic use, and some are very uncomfortable.

addison
October 30, 2015 at 8:12 am

I noticed Still Standing mentioned the cathed specimens and cultures and want to apologize for thinking that was Bejah’s post. I think you, Still Standing, and Bejah have commented on this, which is helpful to those who have symptoms of UTI yet no infection. IC or pelvic myalgias and dysfunction as well as certain medications can cause these symptoms. Chronic infections can stem from nerve damage, obstruction and/or retention. Those of us who catheterize are at high risk for bladder and kidney infections, and one can have true infections as well as pelvic floor dysfunction and myofascial pain.

We appreciate your beautiful words, Still Standing. You’re right; we can’t go back or undo anything, but we can try to recognize or find new purpose. There will be struggles — obstacles we couldn’t forsee and never thought we’d face — but no matter how difficult, our minds, bodies and loved ones need us to fight… to push through as best we can and continue seeking the best treatments while recognizing and cherishing the beautiful moments (even if few and far between). With so much ugly in our world, it’s sometimes hard to see and remember the beautiful, God-given wonders and moments. Keep “standing”!

And even in the fall, as the days darken and we are shown again the way the earth sleeps as fall takes hold and winter seems already to draw close, we are reminded that the earth will again turn, and one day spring will come again and that more importantly rebirth in all things will be visited upon us all….we in this community feel the bittersweet message of fall more than many who seem oblivious to our truths, but we also will in some way awaken when spring comes again. We live, we struggle, we hope, we believe in the promise of a new day, the hope of a better tomorrow, the possibility that one day there will be a just and fair outcome for us all. We learn to let go of what is gone, what can not be, but know that our lives can open on to new ways of being, a deepening of the soul, a new purpose, an awakening (Oh, dear…now I sound like I have been Oprahfied!). It may sound a little dramatic, a little silly, but it’s true, and it is a nice truth, a comforting truth and I am, GOD knows grateful for every little speck of “niceness” and happy, hopeful truth that comes my way. I guess we all are. I do not want to suffer with rage and sadness so I try to let them pass through me. I guess it is called coping.

Here is a great way to encourage you to smile AND encourage others, too. Follow the link below. Science shows that just socially connecting with someone releases endorphins and decreases pain. I carry these cards with me. Just print them on card stock paper. It can change your day and someone else’s, too. That is how we change ourselves and the world. We rise above our circumstances with dignity! We become examples of perserverance and strength. I decided through this that I wanted to show my daughter, my daughter-in-law and my granddaughter how to be strong women. I want that to be my legacy to them. Its a powerful story.

StillStanding, Thank you for so many of your posts. I have bookmarked the link you posted. It is so true, even when it seems impossible…counting our blessings, helping others even in small ways. and taking the focus off of the self…all of this helps a lot.

Bejah. Of all the posts I read, yours just grab at my heart. You seem to have such a string of horrible experiences with physicians. There doesnt seem to be a really good coordination of care and it is time that you demand one. My treating urologist insists that my primary care physican is up on what it going on with me and I ask other physicians I see to send any test results or concerns to her as well as my urogynecologist. I want to make a suggestion…do you have a friend who could accompany you to you doctor visits, someone who can advocate for you and make sure the communication is clear? It is especially important for those on strong pain meds to have an advocate.. Opiods do cause cognitive problems that you may not even be aware of, subtle changes that might result in your physician not understanding your concerns. Anyone who is involved in this mesh mess should have someone with them to help communicate with the physician and be a witness to what is said/done.

Now, as far as the Tramadol. It is not a benign RX. It has serious interactions with many other drugs. Go to drugs.com and type in drug interactions with tramadol. There are hundreds, so be cautious. Also, dont put your meds in the refrigerator. There is too much moisture there for most meds. They do break down over time so confer with your pharmacist.

I want to make a suggestion for help with your muscle spasms. Many times that can be an indication of low magnesium,which many older adults have. Try getting more, but go slowly because it can cause bloating and diahrrhea. I am going to an integrative health MD and he has taught me a great deal about how all of this is impacting my health on a cellular level. I will try to post some updates as I learn more from him. Im convinced that integrative medicine is where we are heading medically, although unfortunately insurance doesnt pay for it right now and it is expensive. I left my first appointment with a very detailed care plan to primarily reduce inflammation and increase autoimmune function. I was with him for 5 1/2 hours. Seriously. Just him. It was the first time I have been able to just lay out all the circumstances surrounding the mesh. He is currently testing me for toxins related to the polypropylene to figure out how to address that issue and I will share his findings. He suggested using Naturally Calm for magnesium. It is a powdered drink and you can get at Target, drug store chains or online. It has been helpful for me.

It just sounds as if your medical care is very fragmented and that is not in your best interest. You have the right to have a coordinated and comprehensive care plan and your physicians have the responsibility to provide one, with you as an important participant in developing it. What you seem to be getting is far from that. Again, demand one. You are worthy of that care.

Still Standing- I’d love to do a story on what advice you are getting….. sounds very helpful.. can we do that, even if you cant be identified?

Still Standing
October 27, 2015 at 9:22 pm

Yes, I can. I left him thinking ” of course”. It just made so much sense to me. He even took me to lunch and kept talking. Would be nice to package him up for everyone. However, much of his treatment is not medical mainstream, but very scientifically based. He has ordered one medication. It is called low-dose naltraxate, or LDN. At full strength, it is used to help people get off opiods, however, it has been found to be very effective on pain and inflammation at a very low dose. . There are some good articles about it on the National Institute of Medicine website. The low dose is not available except by compounding but even compounded, it is pretty inexpensive. He thinks it will have a profound impact on my feeling of well-being and will drastically reduce inflammation. Since I had surgery three weeks ago to remove half of my vagina and replace with skin grafts because of total vaginal ulceration the past two years, I am of course desperate to lower inflammation to increase the success of the grafts, which my doctor gave a 50/50 chance of success., So I am highly motivated, you might say. I have not started the LDN but should receive it soon and will let you know what I think about it. Appears to have very few side effects. yea…..

Dear Still Standing, I am so thankful to you for this post. I think you are right now that I think of it…my care does seem fragmented and that is probably my fault and a result of a lack of trust in physicians that has developed over that last several years, probably since 2007 when I was infected with MRSA in the ER of a hospital in Indio, CA. I was taken there (Everyone should know that if EMT suspect a life threatening situation they will ONLY take you to the closest hospital. In this case it was an awful hospital. I was kept overnight for observation following what they thought may have been a TIA. I was sent home after one night and a week later woke very early in the morning…my left arm was swollen, hot, red and painful. I drove myself back to that ER. They admitted me immediately. I was in isolation for 19 days with a zyvox drip and my stomach injected with blood thinners every few hours it seemed. When I went home I had another week of zyvoxx. I have never been the same. They removed a vein in my left arm due to cellulitis. Nothing has been the same since then. The MRSA was in my blood for a week before it was discovered. I was implanted in 2010. Jane knows of one visit to an “expert” at mesh removal in another state that I have not mentioned here. It was the second, They first was Dr. Michael Margolis. The first physician who I probably should name (I will discuss this with Jane) ordered that I see someone at the University hospital the afternoon I arrived, and this at the last minute. I was to see him the following morning. The explant surgery was scheduled for that Friday. I was not even told the name of the person who was going to examine me. It was a woman, and she seemed very crude. I now believe it was one of those pelvic floor physical therapists but still do not know. I have only recently finally requested my file. When I first tried there was no response. Now the hospital is owned by a private company. When I went in to see this doctor, a urologist, the following morning the first thing he said to me was “You are lying and trying to defraud Johnson & Johnson”. He examined me and gave me a script for pelvic floor PT in Palm Springs. That is the first time I had ever heard of Pelvic Floor PT. I called Amtrack and got the last seat on the train home that evening. I had what must have been a complete mental breakdown on that train. I am now finally in the process of filing a complaint against that doctor with the medical center he is affiliated with and with that state medical board. This is why I am able to understand when others in our community report suffering abuse at the hands of those in the medical and legal professions.

The only reason why I ended up at UCLA is because earlier that year I went to a local Urologist because of aching in my abdomen, not even moderate but definitely present. He ordered imaging. I went in and he told me everything was fine and I might want to try a Gastroenterologist. Later that summer I ate salmon stuffed with crab and the next morning drove to the preferred Medical Center near me with what was food poisoning. The Gastroenterologist remarked that I seemed to have only one kidney. I was shocked. I later went back to the imaging center I had gone to in the spring. I asked to see the report from the imaging ordered by the Urologist I had seen. It clearly stated that I had malformed kidneys and ureters. I asked to speak to the Radiologist. I was told that they would need permission from the ordering physician. I came back in an hour. They told me the ordering physician refused to allow me to speak to the Radiologist. I went to a different Urologist who ordered a renal scan to confirm. That doctor, when my mother expressed dismay about the original Urologist, yelled at her to get out of his office, saying he would not allow criticism of his colleague. I went to UCLA and they figured out a way to justify implanting me with this mesh which IS killing me. I had gone there because of my kidney(s). I made the mistake of trusting the University of California with my health. I was butchered. This is why I tell everyone to get copies of everything, including all images and read all reports themselves.

For 2016 I am going back to a PPO as secondary to Medicare. I can no longer afford high option insurance and it really did not make any difference in my care. This may mean I must again suffer the indignity of being forced to only see doctors approved of by some medical group. It will probably mean that my care will be worse. I do not care what the experts say, this is killing me, I can feel it. I can see that this will end with suicide because I will get to the point where the pain is no longer tolerable. I guess I will need to move to Oregon. Jane spoke of learning to live with the pain, or rather without narcotic pain medication. I hope that is possible for some, even for many but I do not think it is possible for many others. The state sees little value in caring for broken people, people it allowed to be damaged. The state supports, ultimately, the economic interests of this nation, as I have said so many times, the state ultimately does not care about the individual, the people.

SS, You speak of very compelling and worthwhile ideas which I appreciate deeply and will explore. It is and will remain very difficult for me to trust doctors any longer at all.

Bejah

Jane Akre
October 28, 2015 at 11:16 pm

Bejah- I wanted to clarify that SS suggested ways to tolerate the pain,, I do not have that knowledge since i”m not afflicted and would never attempt to address your pain issues…….

I wanted to also add a note about Tramadol and drug intereactions. Thank you for mentioning Tramadol. I will indeed explore that. With regard to drug interactions here is a reason why you all need to always check labtestsonline or another web site about drug interections yourself. Do not depend on your doctor or pharmacist to do it for you.

I was taking Cymbalta for neuropathic pain in my legs and for Depression. I was later prescribed Amphetimine for increasing anxiety. I took 1/2 only of the amphetimine the first time. I had what seemed at the time a psychotic break or something. I found myself sitting in my neighbor’s driveway complaining about my brother being after me and in a big black car that was parked across the street. He was after me, I was afraid of him. My neighbor and friend brought me home and I went to bed. When I woke I was fine. I later checked drug intereactions and there was a serious warning associated with these two drugs. I have not been able to refill the Cymbalta for the last two months because it is a 90 day prescription and I have not had the money. So, I have taken the amphetimine and it does help with the anxiety a lot. The pharmacist has told me that it is OK to take them concurrently but never within about 5 hours of each other (To allow for sufficient clearance I think). I have told the doctor and the pharmacy of my reaction. The doctor quipped “Well, I guess you are allergic to it”. Actually, I am afraid of my brother who has not spoken to me since he learned my mother named me as executor of her Trust, rather than him (He is an attorney). This drug interaction afforded me a look into my own subconscious mind and confirmed that I do have a deep seated fear of my brother, one that is not unfounded. I would not, however want to experience that again. So, please be careful people….check all of your drugs against databases, even supplements and vitimans.

I also wanted to mention that I do take Magnesium as a supplement but very gingerly as I am aware of the need for it and the tolerances, but thank you for that SS, it was a good idea. This also is something we should all look at in our own lives. If we knew, for example, what to watch for with regard to toxins leaching into our bodies over time…now we do not know what to look for. SS is so right about this….it seems pretty clear that legally we are being royally screwed and that will probably not change, if anything it will get worse. What we need to focus on is what we can do to heal ourselves. It is time to turn away from the evil, and look to healing.

Thinking of the idea of taking someone to medical appts., I think that is a good idea for all of us, but I do not have anyone I can take with me to medical appt.s, it is a lot to ask of people and I think we all have a natural fear of doctors, even well before this terrible nightmare that is living with mesh.

Take care all,

Bejah

Jane Akre
October 28, 2015 at 11:13 pm

Did you mention vitamin D?. So many of us are deficient and it is helpful to tissues and general overall health. Mood as well.

We used to take Amphetamines years ago in college to cram for exams. Amazing drug—scarey and the withdrawal when it wears off is the worst anxiety and Paranoia one could imagine—–but the accomplishment while taking them is amazing. Tramadol withdrawal after taking it for short term after orthopedic surgery or revision surgery isnt quite as bad. Send some of those “black cadillacs” east. ha ha I’d love to get out of this reality hell.

Bejah–u are a hoot– u would be so much fun to hang out with–too bad I can’t walk a block

Still Standing
November 1, 2015 at 1:53 pm

Bejah..still trying to piece together all of your medical information. I saw that you posted that you once used Neurontin. It is excellent for neuropathic pain and relatively inexpensive. However, it is not what we would think of as a fast acting pain reliever. It acts on the neurotransmitters in your brain, changes their chemical makeup. So, neurontin is a drug that you take consistently. It may take a while to get the full benefits, and it can make you a little foggy when getting adjusted to it, but it is certainly worth the effort. It would impact all your neuropathic pain areas, it wouldnt just target to one area. It is a brain changer! Also, I am worried that you just stopped taking Cymbalta. This drug needs to be titrated and it is fully possible that increased pain could be from stopping this medication. It, too, works on the brain. Cymbalta does have a prescription drug help,program that you could connect with. Learning how the different medications work is important. While some narcotics address now pain, others work to even out your pain over time. With chronic pain our best approach is to even it out so that there are not tremendlus spikes in pain. Does this make sense?

Bejah Blue
November 3, 2015 at 10:20 pm

Dear Jane, I can not see what you refer to but (1) Not to worry about the pain treatment comment(s), and (2) I am not sure which vitamin you mean but I take D (very important as you say, hope everyone will read about it, forget asking your doctor, be your own doctor where such things are concerned), and I also take a lot of B12. B Complex is also very important and does help with Depression (I can not explain the science, but it does….so does a glass of milk).

XO

Bejah

Jane Akre
November 4, 2015 at 10:05 am

Bejah- I can’t help but wonder about the value of have a diet that leads to proper elimination without straining. Fiber, Seeds, nuts, fruits and vegetables….limiting coffee which leads to increased urine output.

I just got off the phone with my Law Firm, OMG! If you have 2 defective devices for the same thing mine SUI it doesn’t appear to make much difference in your cases. I also found out they are not compensating for bladder, UTI’S only infections associated with if you have mesh removed and infection found, other infections not covered!! IC is also not considered these were decided by both AMS and the attorney’s when they started settlement talk!! I have to appeal for the surgery in july 2015. Any government insurance they are holding back 20% when/if we agree to the settlement offer. The lien company is doing very well negotiating with them as far as possibly paying half or sometimes less. I told her that I heard several clients were refusing the offers.she said not with them. So AMS had a board of doctors and attorney’s also they all met and that’s how they came to the conclusion of what would be associated!!!

Barb- thanks for explaining how diagnoses and age might be looked at. Some nerve injuries cause chronic infections and pain particularly for women frequently catheterizing because of their nerves. I’d think nerve complications and infections from that damage would be considered. Did the firm you spoke with talk about these problems and maybe helping with medications, supplies, counseling, injections, hospitalizations?

Revolting, predictable….they just do what they want. The law, what is just, none of that matters at all. It is just about what they can get away with and still say they did something. I am so truly, terribly sorry….I wish there were something I could do. If we all pray, would that even matter…sometimes it feels like we are so alone.

It is not that I mean to change the subject but I just tried to make an appointment with a “new” pain mgt. doctor. I was told they would require the name and phone number of the pain mgt. medical professional I am seeing now and will want my records before deciding to take me as a patient. Also they said usually they only take new patients that are referred by other doctors, or people new to the area perhaps. People are expected to stay with their present pain mgt. doctors evidently. When the office mgr. of this medical office calls me back I will therefore tell her I will just have my primary care doctor contact them to refer me for care as a new pain mgt. patient. They will still want records from the office I am leaving. I fear they will distort my records out of vengence. On Friday last for example i was given the same blank page that I fill out every time I come in that asks only qualtifiable data (circle a number or fill in a bar). One question was “Is the current medication helping?”. Yes, it is helping but it is now not helping enough, my pain has become considerably worse. I have never asked for an increase in pain medication until now. In his summary the doctor wrote that I indicated that the pain medication level was helping and they actually wrote that I indicated that it “increased” my ability to do things like clean house. That is not true. I neither said nor implied that, quite the opposite. Now I am terrified what they will write about me leaving me with no pain medication. Please, has anyone experienced this?

They also asked not only what my insurance was but put me on hold afterward for a few minutes as if to be sure it was acceptable and then asked me if high option insurance was a PPO?

I am very rattled by all of this. I feel I am being treated as suspect, as drug seeking, as a criminal or something. Nothing could be further from the truth. Thanks.

I think and hope I created a little havic with my attorney after what I was told was/was not being considered! I hate to say that whomever has other attorneys then I have the settlements are going to be similar. Once I was told that these manufacturer’s knew that these products could cause serious injuries I would have been in Category 4 had I had my surgery in 2014 rather then 2015! However the more revisions you have the more monies to be paid to insurance. I also said for these companies whose products contain PP which is not suppose to be used in humans and not properly tested has indeed caused several to have infections, UTI, Bladder and over growth of bacteria and if you have 1 product for SUI which failed another device used I believe the first surgery should be included! Does anyone know if this is true? I said you must have alot of P@@SED woman who are electing to not take what measely offer’s being made, we didn’t ask for this, it’s a lifetime of injuries!! So once the records are reviewed AMS also reviews then Special Master or maybe after a settlement is put that’s when AMS reviews not sure. These manufacturer’s already had a plan in place of what they were willing to include and not. I told her I thought that for those of us who signed should have been given information about how they made their decisions, So if they aren’t covering for us to have SUI organ prolapse fixed and the test we endured they should not get a cent, I also feel they should not recover any monies for each specialist we have seeked out because we KNOW something’s wrong! I actually looked up sepsis one of the causes is multiple UTI’S, there are 3 stages of this infection I’m being treated with and antibiotic plus another bladder, UTI infection. I also said infections are being considered in court cases!!

Barb. I guess I have stuff on my mind tonight and wanted to comment on your statement that you have recurrent uti/bladder infections. I try to pass along information from my urogynecologist because I do think he saved my life…and has protected my well being. He said that many women who think they have a UTI actually dont. In fact, they have tense poorly functioning pelvic muscles. He does not prescribe antibiotics for UTI without a sterile cathed specimen done in his office. No peeing in a cup. Ive been tested for many over the past 8 years and probably 50% of the time I have not had one, even though I had all the usual and uncomfortable symptoms of uti/bladder infection. Even “infections” picked up by my PCP during a physical have been negative with a cathed sample at his office. That is important information to keep you from building antibiotic resistance or overgrowth that leads to yeast infection or C-diff. While he will begin treatment for uti based on catheterized sample, he also sends each one for culture to make sure the antibiotic is appropriate for the bacteria if positive. So, if your treating doctor is treating you for uti based on the pee in the cup sample, you may want to ask to do a catheterized sample. If symptoms are there, but not an infection, asked to be evaluated for pelvic florr tension myalgia./myofascial pain.

Here is another “tip” for those with bladder/uti symptoms. Interstitial cystitis is an overlapping pain condition that women with pelvic pain experience along with irritable bowel, TMJ, fibromyalgia, etc. There is an IC friendly diet recommendation on the IC website. The big ones are acidic foods and caffeine. Women can try eliminating some of the common triggers to see if that settles the bladder down. One observation that my urogyn made has made a big difference. I was there for an appointment and he said that he noticed that I always had a bottle of water with me. I said yes, I tried to drink a lot of water and he said “well stop that.” He said that women with pelvic floor problems should not drink water all day because it means that the bladder is constantly working to process it, thus creating spasms. He told me to drink when I was thirsty and to aim for around 64 oz a day, but not to overdo it. We all hear that we should drink lots and lots of water, but in our case, more is not better. All of these little things that we can change can add up to big differences in our daily comfort.

Indeed very valuable post from SS….thank you so much for enlightening us. I go in and I am certain I must have a UTI, yet I never do. And why have I had Intersistial Cystitis only since post implant I wonder and the Vulvodynia, the increasingly problematic constipation, the increasing yet variable pelvic pain, the sound of dripping in my abdomen deep in the night, the maddening constant urge to empty my bladder when only a few drops are produced, the burning, the tingling, numbness and aching in my legs, the increasing muscle spasms even in my stomach and under my right arm and today at the lab under my chin….what if all my muscles began going into spasm all at once….is this from my spine of from my abdomen or somehow is there an interaction, and more recently headaches and the sense of blurred vision (Need to have eye exam again…it has been two years and then no evidence that explains symptoms…always same answer). Why the absence of appetite yet feeling of being bloated despite weight loss….the strange red spots that come and go…so much and no one seems to have any answers. I have not even had a simple CBC for perhaps two years or longer but now a kindly PA has ordered 15 blood tests that I will have next week at hospital. Will those results also just leave more questions? No one knows anything, none of them want to know, or be involved. I thought medical mysteries were supposed to be interesting to medical professionals. Are they a bunch of sheep? OK, I am done venting (For now).

Vent on Bejah. You ask why all of the body parts are dysfunctional, yet what could be the answer lies smack in the middle of your questions. What you have just described is classic pelvic floor hypertension and they are exactly the same symptoms I battled and still do somewhat when I decide to go off my doctor’s recommendations. When we have abdominal trauma, (mesh, no kidding) , it sets off a chain of changes within the pelvic floor structure. Most all of our pain signals cross through the pelvic muscles. Get out a picture of human anatomy and notice how many muscle groups are in this area. Trauma in the form of mesh causes us to even unconsciously brace this area to protect it. It hurts more. We brace more. In the meantime, scar tissue ( adhesions) form, which further limits the fluidity of these muscles. All,of this leads to muscle spasms, lack of blood flow to the area, surprise…MORE PAIN. But, wait, there’s more. The bladder becomes hypersensitive( bloated feeling often accompanies bladder issues) , the rectal sphincter tightens up, constipation ensues…and MORE PAIN. Then our nice little vulva wants in on the action and tightens up, we brace more. The pathway that sends messages to our brain that we are hungry crosses over in the pelvic floor, so normal hunger messages dont get through, which results in poor nutrition, which impacts ALL cellular function. It also i,pacts our sleep/wake messages, with resulting insomnia. So, instead of having well harmonized groups of muscles like a beautiful symphony, all the messages get off kilter, resulting in loud screaming noise. This is very oversimplified, but hopefully you will begin to see how all of this impacts our pain and how they all interact , like toppling dominoes. It takes hard physical and emotional work to undo this damage, but it CAN be done. We have to be intentional to change this. Once again, a good pelvic floor physical therapist can work wonders. I know you have voiced a distrust of them, but they know how these muscles work and how to get them back to working in harmony. Please think of being open to this treatment. Muscle relaxers are essential as well as lots of rest in between movement. My Doctor wants one hour down for every two hours up. It works wonders when I can practice this. I would love to help you work through some of these challenges if you would like some help rethinking this and identifying things you can do to self care. Your story was my story until I decided to listen to my physician. i finally decided that I had nothing to lose, literally. i wanted to die. So, I was able to change the ending. You have the power to do that as well.

Still Standing
November 5, 2015 at 2:28 am

One more thing regarding your blurred vision. I, too had that and continue having it at times sometimes like vaseline smeared over my eyes but gritty. Look at medication you are taking that causes dry eyes or amount of fluid you are taking in. If your bladder is painful you may drink less and you could be somewhat dehydrated with these two things going on. I have been dehydrated almost every time I have had my fun surgical vacations to the point they had to put in PIC lines Use rewetting drops and drink an appropriate amount of fluid, preferably not caffeinated. I use rewetting drops throughout the day. Dehydration can also cause dental problems, as you have mentioned in other posts. . Our body functions as a whole. When one part is compromised it effects the body systems holistically.

I am just so tired – as far as the compensation, it’s not going to change my situation – I’m still going to have the pain, infections, etc… It’s just sad that these companies feel like they can get away with giving us the minimum. I’ve waited almost 4 years and received my packet only to be slapped in the face with the settlement offer – by the time attorney and everyone else takes their cut, I’ll be lucky if theres anything left for me after its all done and over. I give up!

Many have questioned the length of product liability litigation. My family and I were confused and didn’t understand until reading an article at druganddevicelaw.blogspot.com. Although written in response to the Vioxx settlement, the article explains the mindset and strategy of the defense or defending corporations. Portions of the article are below. I’d like to apologize in advance for mistakes and typos; I’m not feeling well but want to post this before I forget again.

“… Start with a product recall. That gets the drug off the market, and starts the statute of limitations ticking… the recall makes the defense strategy easy: Fight like hell until the statute of limitations expires; then, settle.

You can’t start settling right away. If you throw big bucks at the early plaintiffs, you’re just chumming the waters. You’ll attract many more lawsuits, and the mass tort will get worse. Instead, you must announce that you’ll defend every case until the last cert is denied, to discourage the filing of new cases.

… Announce that you’ll pay billions for defense and not a penny for tribute. Then, fight like the dickens for three years.

The average state statute of limitations for a product liability case is two years; after three years, the statute has expired in 42 of the 50 states. You’d like to fight for six years — until the statute has expired everywhere — but that gets expensive and exhausting. So fight for a minimum of two years, and three years if you can afford it.

Then, settle. After the statute of limitations has expired, you can safely spend a lot of money to settle the mass tort, because potential new plaintiffs will be time-barred …”

———————————————————————————————–

The defense teams hear the suggestions and calls for global settlement; however, they may not budge for reasons outlined in the article. Also, as Jane has explained, many companies prefer to “weed out” claims in which they feel are unsubstantiated. I assume this process is what the companies have found to be the most beneficial in regard to immediate and future financial and reputational success. On the flip side: what about the injured and their families, especially those who desperately need help immediately?

I hope this information helps others understand what is likely occurring. If the authors of the article are correct, we should know more soon.

(I apologize for the 3-4 consecutive posts earlier. The “submit comment” box sometimes disappears after I type a few sentences. Am I doing something wrong, Jane, or could this be from accessing the site and typing from my phone? I’m rarely at the computer and am on my cell now.)

Thank you Addison for this very helpful post. Understand how hard it can be sometimes. With regard to technical issue. you may be accidentally hitting a key that causes the problem you mentioned. I noticed that after the last time I took my laptop in for service the servicer forgot to reset my personal settings so that the touch pad is not active. Accidentally hitting that causes problems in ways that sound not unlike what you are experiencing with your device. May be good to check your settings. BTW I have had that same thing happen with some posts to this site, not sure why. I just start over. I expect Jane or her tech support people Her dogs?) clean it all up pre posting. Not to worry….thx again.

Bejah. Here is the link to the National Pain Strategy.,on page 45 are the names of those who were appointed to the national pain task force. There were some open forums that included people with pain as they were drafting this policy. I am assuming that the CDCs recommendations are in alighment with this committee’s recommendations. I posted this imformation earlier and how it will impact people with chronic pain. Yes, it is very alarming. It will drastically change how those with pain are assessed and treated. There was a 45 day public comment window, but realistically Im sure not a great number of people with chronic pain knew about the comment opportunity.

The Intersistial Cystitis organization and evidently others were not aware of any patient input and clearly stated that no pain experts were consulted so there is some sort of disconnect. I think it is safe to say not many pain sufferers were at all aware of the opportunity to comment and expect that few did or that it would have made any difference at all. Still I would like to know what steps were taken to advise the public of this opportunity and I would like to read the public comments that were posted. Thanks as always for your post SS. I will look to the link you provided.

Bejah. The public comments are on the federal register but are not open to the public at this time. I assume they are being shared interagency as the formal draft is being prepared. I dont know if they have a publication date. Below is the link to the invitation for public comment. This invitation to participate was then shared with potential stakeholders around the country. I particiaped in the public comment opportunity through one of my pain advocacy affiliations but I dont kmow how other groups handled it. Anyone who wanted to leave a comment could do so. I dont know how the IC group and others based their conclusion that no medical people or people with pain were included. It may be in that the CDC policy Is an off shoot of the National Pain Strategy, which did have many medical people on the steering committees. This is an unfolding strategy plan. Hope this information is helpful.

I do not know if this is a list that includes those in the working group that developed these pain management guidelines. Here is basic info. for consideration. There is a list of the members of this group which looks international. CDC has refused to provide names. They also claim that members of the community including pain experts were involved. Other organization say they were NOT included. There seems to be conflicting data.

The Grading of Recommendations Assessment, Development and Evaluation (short GRADE) Working Group began in the year 2000 as an informal collaboration of people with an interest in addressing the shortcomings of present grading systems in health care. The working group has developed a common, sensible and transparent approach to grading quality of evidence and strength of recommendations. Many international organizations have provided input into the development of the approach and have started using it. »» learn more

GRADEpro (now also called the GDT app) – can be found on the GDT website. The Guideline Development Tool is an easy to use all-in-one web solution for summarizing and presenting information for healthcare decision making.

Just to make something perfectly clear—-the MDS are still in charge. If they prescribe a medication for u it can be filled. No one bu can change the order– and you can take Tramadol with Percocet and Gabapentine. It is the Dr who prescribes. Use 1 Dr. Now insurance is a.other issue if they deny–

Kitty,,you are on target with using one doctor. That is why the primary care physician should be informed about what other doctors are prescribing. However, I dont think any of us should be giving the green light to others to take combinations of medications. Although one person can mix tramadol, percocet and neurontin with no adverse effects, adverse response by others are possible.. Mesh women know how “rare” adverse events can personally impact us. Medications dont work in a vacuum. Things that need to be taken into consideration are all the other medications an indiviaual might be taking. Antidepressants and sedatives can particularly change how medicines are metabolized as well as body weight, liver and kidney function, alcohol and caffeine consumption, daily activity level, etc. all of this is weighed in determining if medications are safe to take. That should be a serious discussion between the patient and health care providers.

I just read another article on opiods and chronic pain. While yes, doctors are ultimately the ones who write the prescriptions, it is the opinion of those who work in pain management that how frequently the physician prescribes opiods will become an outcome based measure that will eventually determine how much they will be reimbursed by medicare and private insurance. Thus, doctors who prescribe more pain medications will get less money than those who prescribe less.This is already happening in hospitals. They are ranked on patient care outcomes. Hospitals that are in the low tier get paid less than hospitals that are in the top box. Doesnt make a lot of sense from our vantage , but it is a chilling example of how the medical landscape has chamged . For example, if a patient is readmitted to the hospital,for the same icd code within 30 days, the hospital is fined. So, yes, doctors write the RX now, but they will have even more incentive to limit what they write and how often they will write it in the upcoming year when it impacts them financially. So, once again, I urge all of the readers who use opiods to start the pain conversation with your physician now. Get a game plan in place that addresses your needs.

Ss….that is a good post. It was Personal experience for me using those 3 meds together.. it was short term post op. I guess what I was getting at. The pharmacist was angry and questioned the amount of opioid I was using—but as Bejah posted about pain being relative—Everyone’s pain threshold is different I really dislike that med combo I decribed– but it is used for some post op.

No Kidding. Went to Wal Mart to by Halloween candy. It was shoved in a back corner next to all the Christmas decorations. How could this be? Pretty soon it will all be one big festivity..Hallogivingmas. Witches and turkeys and trees, oh my

Here , here. And let us remember that ALL SOULS DAY follows ALL SAINTS DAY and I think there is another on the day after that for the rest of us (the huddled masses, longing to be free….). GOD bless us, everyone (Except Alex).